Life after Covid, but actually
January 2, 2023 6:50 PM Subscribe
I've had Covid 3 times. All I ever hear about Covid is "you will die". How do I not feel like I'm doomed?
As mentioned, I've had 3 bouts of Covid, all of which were pretty different but hit me pretty hard. I was already disabled before Covid, but even with precautions and vaccinations the first bout in particular led me to drop a lot of opportunities and work for months while my body tries to recover. I might get Long Covid - my doctors are keeping an eye on things but it's a little too soon to say. There weren't really any supports available post Covid - friends were helpful, but there wasn't really anything structural that helped with recovery, you were pretty much left to your own devices.
I do a lot of work in disability justice and disability arts, so a lot of my peer group is also disabled. And all they ever say about Covid is that it's an automatic death sentence especially if you've gotten it multiple times. Whenever I try to talk about how to keep living after Covid, in the sense of "how can society better support Covid survivors like me", people immediately respond with "too bad disabled people not wanting Covid disturbs you" (?!?) or in one case "we don't really do anything for Covid survivors because you're a lost cause". It feels a lot like I'd be better off dead. The only real groups of people I've gotten support and empathy from are other Covid survivors and close friends. I've even gotten fed up of sentiments like "keep wearing a mask or else you will kill people!!" because none of that energy is going towards supporting Covid survivors, many of whom did mask up and wash up and vaccinate and isolate where possible but got it anyway.
I'm more of a pessimist by nature and already struggle with depression as it is but even this is getting to me. I want to be able to do some things again - I accept that it won't be the same as before but I don't want the feeling that nothing is within reach. I've long muted "Covid" and related terms from my socials, but it's a bit difficult to extract myself from my social circles that see spreading news about the deadliness of Covid as effective anti-Covid activism. (I'm not really in touch with any antivax/Covid denier folk but I can't imagine they'd be any more empathetic.)
Some semblance of life after Covid has to be possible, right? My life can't be over, right? I keep thinking to the shift I've seen in my lifetime of AIDS going from an automatic death sentence to something manageable and I wish that so hard for Covid but all I hear is that it's impossible. And to hear that in particular from other disabled peers, so willing to throw away others like me as a lost cause or a cautionary tale, is especially heartbreaking.
How do I keep living?
As mentioned, I've had 3 bouts of Covid, all of which were pretty different but hit me pretty hard. I was already disabled before Covid, but even with precautions and vaccinations the first bout in particular led me to drop a lot of opportunities and work for months while my body tries to recover. I might get Long Covid - my doctors are keeping an eye on things but it's a little too soon to say. There weren't really any supports available post Covid - friends were helpful, but there wasn't really anything structural that helped with recovery, you were pretty much left to your own devices.
I do a lot of work in disability justice and disability arts, so a lot of my peer group is also disabled. And all they ever say about Covid is that it's an automatic death sentence especially if you've gotten it multiple times. Whenever I try to talk about how to keep living after Covid, in the sense of "how can society better support Covid survivors like me", people immediately respond with "too bad disabled people not wanting Covid disturbs you" (?!?) or in one case "we don't really do anything for Covid survivors because you're a lost cause". It feels a lot like I'd be better off dead. The only real groups of people I've gotten support and empathy from are other Covid survivors and close friends. I've even gotten fed up of sentiments like "keep wearing a mask or else you will kill people!!" because none of that energy is going towards supporting Covid survivors, many of whom did mask up and wash up and vaccinate and isolate where possible but got it anyway.
I'm more of a pessimist by nature and already struggle with depression as it is but even this is getting to me. I want to be able to do some things again - I accept that it won't be the same as before but I don't want the feeling that nothing is within reach. I've long muted "Covid" and related terms from my socials, but it's a bit difficult to extract myself from my social circles that see spreading news about the deadliness of Covid as effective anti-Covid activism. (I'm not really in touch with any antivax/Covid denier folk but I can't imagine they'd be any more empathetic.)
Some semblance of life after Covid has to be possible, right? My life can't be over, right? I keep thinking to the shift I've seen in my lifetime of AIDS going from an automatic death sentence to something manageable and I wish that so hard for Covid but all I hear is that it's impossible. And to hear that in particular from other disabled peers, so willing to throw away others like me as a lost cause or a cautionary tale, is especially heartbreaking.
How do I keep living?
first thing you gotta do is disentangle from these peer groups.
You do know that psychological distress (not any physical condition) is the single most predictive factor for long covid, yes?
and i'm sorry to say the green skews heavily covid-anxious, so this may not be the best place to seek support, either. (I know I'll be attacked for this comment, but you sound so unhappy, I'm hoping that a voice of encouragement will be welcome to you, if not to every single person reading this.)
do you feel like you can go out and do stuff? and have friends and enjoy life and be a person in the world? then you can. and you must. covid's here forever now, we all gotta live with it, so all the talk that was focused on avoiding it is moot and has to be replaced with how best to recover from it, as many times as one gets it.
as a practical suggestion, find a social activity focusing on any kind of wellness, whether artistic enjoyment, or exercise, or playing with dogs, or whatever makes you happy.
posted by fingersandtoes at 7:01 PM on January 2, 2023 [48 favorites]
You do know that psychological distress (not any physical condition) is the single most predictive factor for long covid, yes?
and i'm sorry to say the green skews heavily covid-anxious, so this may not be the best place to seek support, either. (I know I'll be attacked for this comment, but you sound so unhappy, I'm hoping that a voice of encouragement will be welcome to you, if not to every single person reading this.)
do you feel like you can go out and do stuff? and have friends and enjoy life and be a person in the world? then you can. and you must. covid's here forever now, we all gotta live with it, so all the talk that was focused on avoiding it is moot and has to be replaced with how best to recover from it, as many times as one gets it.
as a practical suggestion, find a social activity focusing on any kind of wellness, whether artistic enjoyment, or exercise, or playing with dogs, or whatever makes you happy.
posted by fingersandtoes at 7:01 PM on January 2, 2023 [48 favorites]
I think your peers have a very dim view of COVID that’s not reflected in the general population. Most people I know have had COVID at least once, many twice and some three times, and ALL OF THEM are totally fine or have some manageable lingering effects like fatigue or slightly worse asthma but overall don’t really think about it at all.
It sucks to try to find new friends but I think you need a breath of fresh air into your life. Even Metafilter people (me included) are MUCH more serious about COVID than the general population. Usually I try to avoid the general population but in this case I think it might be helpful for you to swing your pendulum in the opposite direction with more normcore views, not to stop masking and being careful (keep doing that) but to stop feeling doomed! You totally aren’t and it makes me sad to think you’re having that drummed into you.
I would suggest you join a well ventilated workout / wellness space and do some exercise that your body can handle - outdoor aqua-fit? Birding walks? Outdoor yoga? Park tai chi? Wellness people tend to think they can bounce back from illness just fine and while they too are a bit delusional about it, I think exposure to the opposite end of the COVID-anxiety spectrum would really help you here.
posted by nouvelle-personne at 7:04 PM on January 2, 2023 [28 favorites]
It sucks to try to find new friends but I think you need a breath of fresh air into your life. Even Metafilter people (me included) are MUCH more serious about COVID than the general population. Usually I try to avoid the general population but in this case I think it might be helpful for you to swing your pendulum in the opposite direction with more normcore views, not to stop masking and being careful (keep doing that) but to stop feeling doomed! You totally aren’t and it makes me sad to think you’re having that drummed into you.
I would suggest you join a well ventilated workout / wellness space and do some exercise that your body can handle - outdoor aqua-fit? Birding walks? Outdoor yoga? Park tai chi? Wellness people tend to think they can bounce back from illness just fine and while they too are a bit delusional about it, I think exposure to the opposite end of the COVID-anxiety spectrum would really help you here.
posted by nouvelle-personne at 7:04 PM on January 2, 2023 [28 favorites]
Your social circle’s attitude is extreme and unhealthy. I can’t believe a disability rights activist would think anyone who has gotten Covid is a lost cause. I feel this is symptomatic of how the Discourse can go these days…it seems these people are so angry at the Covid deniers and anti-vaxxers that they go as extreme as possible in the other direction. Look, a huge percentage of the population has had this thing by now. There can be long-term complications but “everyone who gets it is doomed” is not in line with any of the evidence.
posted by vanitas at 7:07 PM on January 2, 2023 [25 favorites]
posted by vanitas at 7:07 PM on January 2, 2023 [25 favorites]
Response by poster: You do know that psychological distress (not any physical condition) is the single most predictive factor for long covid, yes?
Actually no, I honestly did not, but as someone with a lifetime of mental illness as well as a current major family stressor that can't be easily resolved, that's not exactly encouraging
posted by creatrixtiara at 7:08 PM on January 2, 2023 [6 favorites]
Actually no, I honestly did not, but as someone with a lifetime of mental illness as well as a current major family stressor that can't be easily resolved, that's not exactly encouraging
posted by creatrixtiara at 7:08 PM on January 2, 2023 [6 favorites]
I might get Long Covid - my doctors are keeping an eye on things but it's a little too soon to say.
I would try to reframe this as “Luckily I don’t seem to have long COVID. I’m glad I took care of myself with vaccines, masking, a varied diet with lots of different nutrients, hydration, activity, and sleep. I’m so thankful that my body fought it off well and is bouncing back!“
posted by nouvelle-personne at 7:12 PM on January 2, 2023 [41 favorites]
I would try to reframe this as “Luckily I don’t seem to have long COVID. I’m glad I took care of myself with vaccines, masking, a varied diet with lots of different nutrients, hydration, activity, and sleep. I’m so thankful that my body fought it off well and is bouncing back!“
posted by nouvelle-personne at 7:12 PM on January 2, 2023 [41 favorites]
I'm not quite sure what you're asking precisely but I've had COVID at least twice, more likely three times (counting the "flu" I had in early March 2020 that resulted in a loss of taste and smell). I was overweight and a smoker with depression and anxiety diagnoses. Today my health (as measured by bloodwork results, blood pressure, heart rate and overall levels of physical and mental activity) is literally better than it has ever been in my life, including when I was a teenager. Not as a result of COVID, of course, but of lifestyle changes I made that happened to take place after the last time I got it in June of last year.
Some people will obviously have very different experiences, but at the very least you're very far from a lost cause. My suspicion is that the kinds of toxic reactions you're getting are a result of in-group polarization dynamics that have nothing to do with covid or disability activism.
posted by derrinyet at 7:21 PM on January 2, 2023 [10 favorites]
Some people will obviously have very different experiences, but at the very least you're very far from a lost cause. My suspicion is that the kinds of toxic reactions you're getting are a result of in-group polarization dynamics that have nothing to do with covid or disability activism.
posted by derrinyet at 7:21 PM on January 2, 2023 [10 favorites]
Response by poster: Nouvelle-personne: sorry don't mean to threadsit but I just wanted to clarify that I say that Long Covid is possible due to my other health conditions as well as some of the Covid aftermath I've been facing since my infections. My body's just a hot mess in general! but because it's only really been a couple of months since my last bout it's still in the "keep an eye out" phase
posted by creatrixtiara at 7:26 PM on January 2, 2023
posted by creatrixtiara at 7:26 PM on January 2, 2023
Long Covid is a very real concern that affects a lot of people, in some cases severely. But at the same time, being significantly affected is relatively rare and a strong majority of people make a complete recovery. So life after Covid is entirely the same as life before Covid — for most people, but not all (and I write this as someone who is disabled by a chronic illness, has been very careful, recently had Covid and was fine).
Even among those who take a few months to recover, the data we have to date seems to suggest that most will fully recover in time. So there is a risk there, it is significant, and I totally agree with you that we are systematically ignoring that risk and ignoring the people who are suffering from Long Covid, some of them for nearly three years now. The data also suggests that people are less likely to end up with Long Covid after they have been vaccinated and/or had previous bouts of Covid. So if you've had Covid a few times and are vaccinated, your risk at this point is a lot lower than it was before.
How you manage your own risk is really challenging, now that most people aren't willing to do anything at all to reduce transmission. It's a struggle to accept and it isn't easy to find your own path through this. I wish there was a better answer and this is awful to write, but I don't think there's much we can do about it at this point. People who wanted more caution largely lost this fight.
By the way, I would suggest ignoring the Harvard study linked above on psychological distress and Long Covid, which is just the latest in a long series of methodologically-flawed research from researchers who have pre-conceived notions about chronic illness and design studies to affirm their beliefs (and not coincidentally, these conclusions are welcomed by people who want to believe they couldn't possibly end up with Long Covid themselves). There's such a long history of garbage research on this subject that is really harmful to people with chronic illnesses.
posted by ssg at 7:27 PM on January 2, 2023 [9 favorites]
Even among those who take a few months to recover, the data we have to date seems to suggest that most will fully recover in time. So there is a risk there, it is significant, and I totally agree with you that we are systematically ignoring that risk and ignoring the people who are suffering from Long Covid, some of them for nearly three years now. The data also suggests that people are less likely to end up with Long Covid after they have been vaccinated and/or had previous bouts of Covid. So if you've had Covid a few times and are vaccinated, your risk at this point is a lot lower than it was before.
How you manage your own risk is really challenging, now that most people aren't willing to do anything at all to reduce transmission. It's a struggle to accept and it isn't easy to find your own path through this. I wish there was a better answer and this is awful to write, but I don't think there's much we can do about it at this point. People who wanted more caution largely lost this fight.
By the way, I would suggest ignoring the Harvard study linked above on psychological distress and Long Covid, which is just the latest in a long series of methodologically-flawed research from researchers who have pre-conceived notions about chronic illness and design studies to affirm their beliefs (and not coincidentally, these conclusions are welcomed by people who want to believe they couldn't possibly end up with Long Covid themselves). There's such a long history of garbage research on this subject that is really harmful to people with chronic illnesses.
posted by ssg at 7:27 PM on January 2, 2023 [9 favorites]
Best answer: Hi! I got the equivalent of long COVID from a different virus over ten years ago. Still have it. And my life is... fine? Yeah, I have to take a careful balance of medications to control symptoms, and my life has to be structured around my disability, but I don't really feel like it limits me from being happy and fulfilled most of the time. Rather than seeing my life as being damaged, I found the edges of my capacity and then filled those up in ways that felt good and accessible to me. For me, it was a little easier, because I got sick as a teenager while I was still exploring things, so it was easier to give up gymnastics and horseback riding for books and art, and I had more lead time for switching to a career that worked with my chronic illness. But I also had other illnesses come later, such as migraines, that I learned to manage and work around as an adult in much the same way, so I don't think it's impossible.
Basically, what I'm saying is you can have a fulfilling life even if you're sick for the rest of it. It takes work, and it takes support, I'm not gonna say it's easy or that luck and resources didn't play a part for me. But even if you get sick, there are still ways to build yourself into a new shape around that sickness, and it can still be a good, happy, fulfilled shape.
I'm sorry your communities are treating you like this. It sounds wildly unhelpful and cruel to me, and tbh is why I withdrew from a lot of disability/chronic illness communities a while ago. Feel free to MeMail me if you want to talk more from the perspective of someone who isn't tapped into what I think has become some pretty toxic discourse (even if it has well-meaning roots).
posted by brook horse at 7:27 PM on January 2, 2023 [68 favorites]
Basically, what I'm saying is you can have a fulfilling life even if you're sick for the rest of it. It takes work, and it takes support, I'm not gonna say it's easy or that luck and resources didn't play a part for me. But even if you get sick, there are still ways to build yourself into a new shape around that sickness, and it can still be a good, happy, fulfilled shape.
I'm sorry your communities are treating you like this. It sounds wildly unhelpful and cruel to me, and tbh is why I withdrew from a lot of disability/chronic illness communities a while ago. Feel free to MeMail me if you want to talk more from the perspective of someone who isn't tapped into what I think has become some pretty toxic discourse (even if it has well-meaning roots).
posted by brook horse at 7:27 PM on January 2, 2023 [68 favorites]
I remain cautious around COVID and the things people are saying to you are untrue fearmongering, full stop. Each individual person who gets infected now has a very low chance of dying from that infection, many times lower than in the first wave. I believe it is still a problem we should care about because it is contagious enough that it will still kill a hundred thousand people a year or more. But that is because it infects so many. An individual infection is for most people extremely unlikely to be a death sentence.
Hopefully your doctor is more helpful than you describe your peers being. Doctors can be incredibly awful to people with disabilities, though.
posted by eirias at 7:32 PM on January 2, 2023 [10 favorites]
Hopefully your doctor is more helpful than you describe your peers being. Doctors can be incredibly awful to people with disabilities, though.
posted by eirias at 7:32 PM on January 2, 2023 [10 favorites]
You say you are active in Disability Justice.... Could you make a formal proposal to the group about a 2-pronged approach to covid :the traditional advice on how to avoid it AND support for survivors? Maybe raise money for a survey among the Disability community about their covid experiences, so as to gauge the knowledge of the percentages who have avoided it, have had it, have died from it or have lingering symptoms.
Otherwise, you need to just stop mentioning it in your current groups. Only talk about covid in the Survivors group you found. Maybe keep looking for a crossover group of survivors with disabilities.
posted by CathyG at 7:50 PM on January 2, 2023 [4 favorites]
Otherwise, you need to just stop mentioning it in your current groups. Only talk about covid in the Survivors group you found. Maybe keep looking for a crossover group of survivors with disabilities.
posted by CathyG at 7:50 PM on January 2, 2023 [4 favorites]
On a long enough timeline, the survival rate for everybody drops to zero. Everyone, Covid survivor or not, is going to die someday. The two questions are when? (which is a hard question to answer) and what will you do between now and then? (which is the important one).
Statistically, it looks like the vast majority of people who have had Covid don’t get long Covid. I’m seeing around 20-25% of survivors develop it, which means that 75-80% don’t. And even if you’re in that 20-25%, that’s not saying anything about timelines or quality of life.
The thing about chronic conditions is that they’re often different from one case to another. I know a guy with leukemia who spends most of his life now traveling. He had a bone marrow transplant and developed graft vs host disease, which makes it nearly impossible for him to walk. But as soon as he got out of the hospital, he was back to traveling, just with a friend and a chair. He’s living his life. That’s all you can do. Do what you can while you can.
posted by kevinbelt at 8:00 PM on January 2, 2023 [4 favorites]
Statistically, it looks like the vast majority of people who have had Covid don’t get long Covid. I’m seeing around 20-25% of survivors develop it, which means that 75-80% don’t. And even if you’re in that 20-25%, that’s not saying anything about timelines or quality of life.
The thing about chronic conditions is that they’re often different from one case to another. I know a guy with leukemia who spends most of his life now traveling. He had a bone marrow transplant and developed graft vs host disease, which makes it nearly impossible for him to walk. But as soon as he got out of the hospital, he was back to traveling, just with a friend and a chair. He’s living his life. That’s all you can do. Do what you can while you can.
posted by kevinbelt at 8:00 PM on January 2, 2023 [4 favorites]
This late in the game it is not reasonable to view COVID as an automatic death sentence. I was an ER nurse, I saw lots of people die of COVID early on and it was horrible. But now people are vaccinated and hospitals are better equipped to manage care of critically ill people with an airborne illness. I’m only per diem now but I haven’t had a patient die of COVID in… a year, maybe? And I used to wait for patients to die by watching their heart rhythm change and 02 drop on the monitor, because I couldn’t be in the room with them because I needed to devote my care to the patients who had a chance of surviving.
I want to be clear - fuck COVID. People died alone. That would NEVER have happened in my ER before COVID.
But it’s not like that anymore. I’ve had COVID three times. Fuck long COVID. Monitor your symptoms and get medical attention when necessary but it’s not the boogey man coming to get you as soon as you let your guard down.
posted by pintapicasso at 8:04 PM on January 2, 2023 [37 favorites]
I want to be clear - fuck COVID. People died alone. That would NEVER have happened in my ER before COVID.
But it’s not like that anymore. I’ve had COVID three times. Fuck long COVID. Monitor your symptoms and get medical attention when necessary but it’s not the boogey man coming to get you as soon as you let your guard down.
posted by pintapicasso at 8:04 PM on January 2, 2023 [37 favorites]
One more voice against your doom-saying peers. They are completely off any reason or logic. I am fat and old and have asthma and pre-diabetes, so I was extremely careful in the beginning and have had all the vaccine and booster shots, and COVID twice in spite of those. The second time I had symptoms for almost exactly six months, but now it is over. I can taste and smell again, and walk up and down the stairs all day. The only thing that hasn't recovered completely is my ankle: COVID led to joint issues all over my body, but most recovered, the ankle has an old injury that seems to be a bit more stubborn.
However, this is not dying. I had tests done while I still had all the symptoms of long COVID, because there is a heightened risk of blod clots, but I was actually in better shape than before COVID, probably because I spent lockdown improving my diet.
posted by mumimor at 8:24 PM on January 2, 2023 [5 favorites]
However, this is not dying. I had tests done while I still had all the symptoms of long COVID, because there is a heightened risk of blod clots, but I was actually in better shape than before COVID, probably because I spent lockdown improving my diet.
posted by mumimor at 8:24 PM on January 2, 2023 [5 favorites]
Wow, I have never heard this. I've managed to avoid covid, and if I'm anxious it's because I don't want to get it, as simple as that. But my mom, who's 85 years old and has dementia, has had it three times, and she's still very much alive. One of my best friends has also had it three times, and is also alive and kicking.
Please find some friends who are more optimistic and life-affirming. We're all going, eventually. Make the most of the life you have, while you have it.
posted by lhauser at 8:47 PM on January 2, 2023 [4 favorites]
Please find some friends who are more optimistic and life-affirming. We're all going, eventually. Make the most of the life you have, while you have it.
posted by lhauser at 8:47 PM on January 2, 2023 [4 favorites]
The lack of structural supports for covid infection and recovery are the same that affect all disabled people. So it's all hacked together from community and communal knowledge. I am lucky that my meta is a health care professional - and somehow has continued to test negative with no symptoms since she is extremely high risk - but also deeply practical. Because the moment we stopped lockdown and quarantine at national or state levels it became far far more likely we would get it and we needed to have structures. I'm also lucky that I come from a highly practical family, and friends. So even in isolation with my cat, I'm reporting symptoms etc to my meta (partially to track and partially so she can feel a bit more at ease since I am not at her house anymore), I have folk helping me with my kid, I know what helped some folk, and things to do if I end up an outlier.
Because the big bad long covid conditions are outliers. But they aren't new, individually, they're just a lot more widespread. I have an autoimmune condition currently in non-symptomatic state - my Dr will help manage that if I become symptomatic. I have had several bouts of glandular fever, and a few other infectious things that like to lurk around and reemerge. You manage them. I know the signs, I can go to my GP and say "hey X is happening" and we can run a test to see what's up. I can follow the protocols of rest, hydration, intentional gentle movement, medication. I include the latter two because those are key for me - exercise is a whole issue for treating a lot of the common fatigue conditions but for me the trade-off if I don't do gentle movement is that I end up with the chronic spinal and pelvic issues making everything worse. So I work out the limits and slowly move back into habits. It'll be the same for covid as it was when my thyroid went haywire last time. Or the glandular fever. Or the shingles.
The structural element to covid recovery and long covid are existing issues for medical and social systems. I would genuinely be deeply concerned for anyone who insisted covid infection was a death sentence for everyone, or that there's nothing to do for those with long covid, because that's as much an overreaction as denying it entirely. I also wouldn't trust their takes on disability politics or activism - prevention is absolutely best policy but I'm not going to pretend my kid could be homeschooled with no ill-effects due to their particular neurodiversity or my own. Or that we would somehow be better served by my meta giving up her job since it is high risk (someone has to provide health care and that person can't just never see humans outside work in case of infection). I understand being pessimistic and angry at governmental decisions that were made - because they were bad and sacrificed a lot of folk - but that doesn't apply individually. And if someone kept telling me that not only am I gonna die from covid that if I do face ongoing issues that I'm a lost cause and that we are all a lost cause after it? I'd genuinely be concerned for their mental health but also, after communicating that, would probably avoid them. I'd definitely avoid talking about covid with them unless they're willing to do some research.
But I'd also not call myself a covid survivor, or my folks that. It's not congruent with the reality of it which is something that isn't deadly in the same way cancer is, or HIV was. Those are unnecessary comparisons. And given the deeply individual and broad effects of long covid itself, as a category it makes no sense. My folks don't have particular medical needs after their two bouts. A few friends do, very different ones, after one bout. Hell, even in the experience (we both have covid right now) my partner and I had different symptomologies and patterns (admittedly he had paxlovid). What can be done for folks who had covid is a hugely broad swathe of deeply different needs and the use of the word survivor is one that is unwarranted. And depending on environment, unhelpful - it's fair to focus on prevention for vast majorities of disability advocacy agencies, and when it comes to long covid, that'll often fall into those categories anyway (fatigue, vascular issues, post-ICU things). All of which aren't well supported anyway. Drawing away focus to encompass a large number of people of whom most do not require support at all is not useful in discussion. And without a clear symptomology for long covid, it is going to sit in a variety of spaces within disability activism. It's more useful to narrow down to what supports are necessary for individuals.
Now, support for active infection is a different story. I'm lucky my kid hadn't seen me so wasn't at risk, and that I have a few folk they could stay with. But when they did get it earlier last year, it meant three weeks off school because of how their dad's household got infected and they got it at the end. And we could weather that. Lots of folk can't. And it would have been worse if one or more of that household got extremely ill. I'm lucky - I feel like shit but I can still feed and hydrate myself. I'm used to living on my own. If I were worse off I have emergency back up plans for kid and cat and myself. My meta is up to date on symptoms and what I'm using the manage it (Panadol, hydration, rest) and if something out of the ordinary happens I can message her, or government services. She can mask up and come take vitals if necessary before I involve medical services. If I get some weird outlier symptoms she has probably seen it before (itchy teeth!) and will likely be watching me and our partner like a hawk over the next few weeks for long covid shit. Most folk don't have that. And it does contribute to longer recovery and poorer outcomes.
posted by geek anachronism at 9:20 PM on January 2, 2023 [1 favorite]
Because the big bad long covid conditions are outliers. But they aren't new, individually, they're just a lot more widespread. I have an autoimmune condition currently in non-symptomatic state - my Dr will help manage that if I become symptomatic. I have had several bouts of glandular fever, and a few other infectious things that like to lurk around and reemerge. You manage them. I know the signs, I can go to my GP and say "hey X is happening" and we can run a test to see what's up. I can follow the protocols of rest, hydration, intentional gentle movement, medication. I include the latter two because those are key for me - exercise is a whole issue for treating a lot of the common fatigue conditions but for me the trade-off if I don't do gentle movement is that I end up with the chronic spinal and pelvic issues making everything worse. So I work out the limits and slowly move back into habits. It'll be the same for covid as it was when my thyroid went haywire last time. Or the glandular fever. Or the shingles.
The structural element to covid recovery and long covid are existing issues for medical and social systems. I would genuinely be deeply concerned for anyone who insisted covid infection was a death sentence for everyone, or that there's nothing to do for those with long covid, because that's as much an overreaction as denying it entirely. I also wouldn't trust their takes on disability politics or activism - prevention is absolutely best policy but I'm not going to pretend my kid could be homeschooled with no ill-effects due to their particular neurodiversity or my own. Or that we would somehow be better served by my meta giving up her job since it is high risk (someone has to provide health care and that person can't just never see humans outside work in case of infection). I understand being pessimistic and angry at governmental decisions that were made - because they were bad and sacrificed a lot of folk - but that doesn't apply individually. And if someone kept telling me that not only am I gonna die from covid that if I do face ongoing issues that I'm a lost cause and that we are all a lost cause after it? I'd genuinely be concerned for their mental health but also, after communicating that, would probably avoid them. I'd definitely avoid talking about covid with them unless they're willing to do some research.
But I'd also not call myself a covid survivor, or my folks that. It's not congruent with the reality of it which is something that isn't deadly in the same way cancer is, or HIV was. Those are unnecessary comparisons. And given the deeply individual and broad effects of long covid itself, as a category it makes no sense. My folks don't have particular medical needs after their two bouts. A few friends do, very different ones, after one bout. Hell, even in the experience (we both have covid right now) my partner and I had different symptomologies and patterns (admittedly he had paxlovid). What can be done for folks who had covid is a hugely broad swathe of deeply different needs and the use of the word survivor is one that is unwarranted. And depending on environment, unhelpful - it's fair to focus on prevention for vast majorities of disability advocacy agencies, and when it comes to long covid, that'll often fall into those categories anyway (fatigue, vascular issues, post-ICU things). All of which aren't well supported anyway. Drawing away focus to encompass a large number of people of whom most do not require support at all is not useful in discussion. And without a clear symptomology for long covid, it is going to sit in a variety of spaces within disability activism. It's more useful to narrow down to what supports are necessary for individuals.
Now, support for active infection is a different story. I'm lucky my kid hadn't seen me so wasn't at risk, and that I have a few folk they could stay with. But when they did get it earlier last year, it meant three weeks off school because of how their dad's household got infected and they got it at the end. And we could weather that. Lots of folk can't. And it would have been worse if one or more of that household got extremely ill. I'm lucky - I feel like shit but I can still feed and hydrate myself. I'm used to living on my own. If I were worse off I have emergency back up plans for kid and cat and myself. My meta is up to date on symptoms and what I'm using the manage it (Panadol, hydration, rest) and if something out of the ordinary happens I can message her, or government services. She can mask up and come take vitals if necessary before I involve medical services. If I get some weird outlier symptoms she has probably seen it before (itchy teeth!) and will likely be watching me and our partner like a hawk over the next few weeks for long covid shit. Most folk don't have that. And it does contribute to longer recovery and poorer outcomes.
posted by geek anachronism at 9:20 PM on January 2, 2023 [1 favorite]
Despite taking precautions, and being careful. I got COVID twice myself. Possibly three times. This is while I'm also vaccinated, with all of the boosters, of an mRNA vaccine.
The last time I got COVID? I got a Paxlovid prescription, and that made all of the difference in the world. If that is an option that you'd consider, I'd talk to your doctor ahead of time, to see if you qualify for one, so that you can get it when you get sick again.
As for living with Long Covid? I have it. It sucks, but I'm extremely fortunate that it's mild, it's getting better, and that I have a job where I can still work from home from. I do find it frustrating at times, but I have found ways to cope with it - I have more sedentary hobbies, I'm in PT for it, and now I use a rollator. But overall, I feel that I have a pretty good life.
posted by spinifex23 at 9:28 PM on January 2, 2023 [3 favorites]
The last time I got COVID? I got a Paxlovid prescription, and that made all of the difference in the world. If that is an option that you'd consider, I'd talk to your doctor ahead of time, to see if you qualify for one, so that you can get it when you get sick again.
As for living with Long Covid? I have it. It sucks, but I'm extremely fortunate that it's mild, it's getting better, and that I have a job where I can still work from home from. I do find it frustrating at times, but I have found ways to cope with it - I have more sedentary hobbies, I'm in PT for it, and now I use a rollator. But overall, I feel that I have a pretty good life.
posted by spinifex23 at 9:28 PM on January 2, 2023 [3 favorites]
Best answer: You do know that psychological distress (not any physical condition) is the single most predictive factor for long covid, yes?
The beatings will continue until morale improves.
I've had Covid 3 times. All I ever hear about Covid is "you will die". How do I not feel like I'm doomed?
Mainly by making a deliberate and conscious personal policy of giving less weight to the opinions of people prone to catastrophizing, fortune telling and over-simplified binary thinking.
Covid is well worth doing what we can to avoid spreading because there undoubtedly and irrefutably are people it will kill. But if Covid is going to kill somebody, it will do so during a bout.
If I'd already survived three bouts, I'd be thinking of myself as somebody whose body has provided ample proof that surviving Covid is a thing that I personally am quite capable of doing, and that my ultimate and inevitable doom will much more likely involve something entirely else.
If I ever find myself dealing with debilitating symptoms from long Covid, I'll just be doing so as best I can, including paying attention to my mental health and keeping up with whatever self-care is needed to maintain the best condition achievable.
I haven't had Covid to the best of my knowledge, but I do struggle with several other chronic issues and "what can't be cured must be endured" is a mantra for me if I start to feel a bit down about any of those. That attitude got me through years of chronic fatigue and associated severe depression before Covid was even a thing, and if I do end up copping a dose I expect it will get me through that as well.
posted by flabdablet at 9:40 PM on January 2, 2023 [23 favorites]
The beatings will continue until morale improves.
I've had Covid 3 times. All I ever hear about Covid is "you will die". How do I not feel like I'm doomed?
Mainly by making a deliberate and conscious personal policy of giving less weight to the opinions of people prone to catastrophizing, fortune telling and over-simplified binary thinking.
Covid is well worth doing what we can to avoid spreading because there undoubtedly and irrefutably are people it will kill. But if Covid is going to kill somebody, it will do so during a bout.
If I'd already survived three bouts, I'd be thinking of myself as somebody whose body has provided ample proof that surviving Covid is a thing that I personally am quite capable of doing, and that my ultimate and inevitable doom will much more likely involve something entirely else.
If I ever find myself dealing with debilitating symptoms from long Covid, I'll just be doing so as best I can, including paying attention to my mental health and keeping up with whatever self-care is needed to maintain the best condition achievable.
I haven't had Covid to the best of my knowledge, but I do struggle with several other chronic issues and "what can't be cured must be endured" is a mantra for me if I start to feel a bit down about any of those. That attitude got me through years of chronic fatigue and associated severe depression before Covid was even a thing, and if I do end up copping a dose I expect it will get me through that as well.
posted by flabdablet at 9:40 PM on January 2, 2023 [23 favorites]
Just chiming in to say the study on psychological distress being predictive of Long Covid has been debunked. It can hit anyone and multiple studies with control groups show that anxiety and depression are not higher in people with Long Covid than people who recover fully. That said, it makes people feel better to think that psychological distress plays a part, because then they don't have to confront the reality that getting it is out of their control.
I'm sorry for the lack of support from the communities close to you.
posted by todolos at 9:43 PM on January 2, 2023 [18 favorites]
I'm sorry for the lack of support from the communities close to you.
posted by todolos at 9:43 PM on January 2, 2023 [18 favorites]
You're not in activist circles now, you're (inadvertently) in trauma cults. Find new friends. I think everyone is still trying to figure out the best responses over the broad range of post-COVID experiences, but that kind of thinking is literally useless to you, as you're finding. Cutting yourself free can only help.
posted by praemunire at 10:07 PM on January 2, 2023 [20 favorites]
posted by praemunire at 10:07 PM on January 2, 2023 [20 favorites]
Best answer: I like this line from today's issue of Calm Covid (which is great in general, but this particular line seems on topic):
A stopped clock is right twice a day, but if it also screams and tries to terrify you, it’s haunted and you should get rid of it.posted by caek at 10:19 PM on January 2, 2023 [41 favorites]
Life is already a death sentence. So many factors like air pollution (do any of these people live in cities? They're at an automatic disadvantage!) and genetic inheritances we're largely unaware of and dietary intake and sudden allergies and exercise and happiness and stress levels and a million random things are statistically likely to affect health and lifespans. Every time you cross the street or eat a sandwich is a roll of the dice. Thinking about that too much is the way to madness, literally. The way you keep living is taking each day as it comes.
The quotes you mentioned are bizarre and if that is literally what a person or group is saying then they're both cruel and truly simplistic thinkers prone to extremism, which is a good thing to know about them and a good quality to learn to recognize in the future. But I'm not sure why you mention "antivax/Covid denier folk" as the alternative? I'm guessing it was a joke, but that would be going from one extreme to the other and skipping over the whole vast relatively sane middle. It's really easy to be drawn to people like that, and if you tend to be then that's worth knowing about yourself. If you don't have many people in your life giving worthwhile input on this, then I'd take it as an opportunity to start assessing things like empathy and complex thinking and gentleness in the new people you meet - and given that you're most likely to have a long and eventful life still ahead of you, it's probably worth adding more people with those qualities to the mix that you surround yourself with.
Also, if most of your conversations about this have been online, you might want to move away from that.
Anyway, I'm pretty severely limited by long-term chronic fatigue stuff and maybe it'll shorten my lifespan because it enforces a sedentary lifestyle and regardless, I hate it. But even that's not the end of life being full and interesting. You would think disability activists would be aware of that. Also, if getting covid 3 times were a death sentence then finding sympathy for it would be a self-solving problem, because a huge proportion of the world has already had it multiple times and that proportion is only going to grow unless something changes, so you're in a hell of a lot of company.
posted by trig at 12:26 AM on January 3, 2023 [2 favorites]
The quotes you mentioned are bizarre and if that is literally what a person or group is saying then they're both cruel and truly simplistic thinkers prone to extremism, which is a good thing to know about them and a good quality to learn to recognize in the future. But I'm not sure why you mention "antivax/Covid denier folk" as the alternative? I'm guessing it was a joke, but that would be going from one extreme to the other and skipping over the whole vast relatively sane middle. It's really easy to be drawn to people like that, and if you tend to be then that's worth knowing about yourself. If you don't have many people in your life giving worthwhile input on this, then I'd take it as an opportunity to start assessing things like empathy and complex thinking and gentleness in the new people you meet - and given that you're most likely to have a long and eventful life still ahead of you, it's probably worth adding more people with those qualities to the mix that you surround yourself with.
Also, if most of your conversations about this have been online, you might want to move away from that.
Anyway, I'm pretty severely limited by long-term chronic fatigue stuff and maybe it'll shorten my lifespan because it enforces a sedentary lifestyle and regardless, I hate it. But even that's not the end of life being full and interesting. You would think disability activists would be aware of that. Also, if getting covid 3 times were a death sentence then finding sympathy for it would be a self-solving problem, because a huge proportion of the world has already had it multiple times and that proportion is only going to grow unless something changes, so you're in a hell of a lot of company.
posted by trig at 12:26 AM on January 3, 2023 [2 favorites]
I’ve had long covid since an (assumed - there were no tests then) infection in March 2022. Initially all I could do was walk slowly for 10 minutes a day. By now I can live life pretty much normally but can’t really do much cardio exercise (and I used to be a runner).
One thing I found early on was that the communities that sprung up to support people with long covid varied wildly in their approach and tone. There were two in particular that I found myself choosing between: One was set up primarily to campaign for better support for people with LC in my locality. They were very political - and also very angry. Justifiably so - we had senior politicians stand up on the news and say: “We can’t allocate any money to supporting people with long covid because that would mean taking it away from other patients,” as if they were more deserving and LC patients were being selfish by expecting even a few crumbs of support. But it did feel like the only way to interact with this group was to be angry, and to be prepared to go into battle.
The other group was yoga-based, much more hippy-dippy, focused on wellbeing and meditation and yoga and positivity. At its further reaches, it could be irritatingly “think yourself well,” though never quite strayed into full-blown toxic positivity. But all in all, it was a gentle, welcoming, caring place to be, and even though I found some bits of it irritating, it gave me a sense of optimism and kindness and camaraderie.
I felt kind of guilty that the second of the two was the place I really wanted to hang out. After all, someone had to be campaigning for better support, shouldn’t I be playing my part? But I eventually figured that the people in that group were OK with being angry. Maybe they were angry already and the group gave them a place to express it. Or maybe they just had a higher tolerance for having anger in their lives. I couldn’t bear it, it just depressed me.
So I chose the yoga group as my long covid home, and had a much gentler, happier time because of it.
If this rings any bells, give yourself permission not to be at the barricades with the angry folk, or doom-saying with the pessimists, if that doesn’t suit you. When you’re sick, you really do have to put your own mask on first, and if that means stepping away from activist groups into communities that are more focussed on your wellbeing than on fighting the good fight, you’re allowed to do that.
posted by penguin pie at 5:26 AM on January 3, 2023 [9 favorites]
One thing I found early on was that the communities that sprung up to support people with long covid varied wildly in their approach and tone. There were two in particular that I found myself choosing between: One was set up primarily to campaign for better support for people with LC in my locality. They were very political - and also very angry. Justifiably so - we had senior politicians stand up on the news and say: “We can’t allocate any money to supporting people with long covid because that would mean taking it away from other patients,” as if they were more deserving and LC patients were being selfish by expecting even a few crumbs of support. But it did feel like the only way to interact with this group was to be angry, and to be prepared to go into battle.
The other group was yoga-based, much more hippy-dippy, focused on wellbeing and meditation and yoga and positivity. At its further reaches, it could be irritatingly “think yourself well,” though never quite strayed into full-blown toxic positivity. But all in all, it was a gentle, welcoming, caring place to be, and even though I found some bits of it irritating, it gave me a sense of optimism and kindness and camaraderie.
I felt kind of guilty that the second of the two was the place I really wanted to hang out. After all, someone had to be campaigning for better support, shouldn’t I be playing my part? But I eventually figured that the people in that group were OK with being angry. Maybe they were angry already and the group gave them a place to express it. Or maybe they just had a higher tolerance for having anger in their lives. I couldn’t bear it, it just depressed me.
So I chose the yoga group as my long covid home, and had a much gentler, happier time because of it.
If this rings any bells, give yourself permission not to be at the barricades with the angry folk, or doom-saying with the pessimists, if that doesn’t suit you. When you’re sick, you really do have to put your own mask on first, and if that means stepping away from activist groups into communities that are more focussed on your wellbeing than on fighting the good fight, you’re allowed to do that.
posted by penguin pie at 5:26 AM on January 3, 2023 [9 favorites]
How do I not feel like I'm doomed?
I want to focus on just this question. Everyone has their own method of coping. A few other posters mention avoiding mention of covid in media. Maybe you need meditation or other ways of learning to observe your thoughts without being ruled by them? Maybe you need a different info diet? Sounds like you definitely need to temper your exposure to the people who say horrible things to you.
My method of not feeling doomed involves more of the right kind of info, and almost none of the kind that's wrong for me. (My brother died of covid, I studied covid misinfo in my MPH program, I work with covid scientists, and I know a few people debilitated by long covid.) I follow the scientists conducting and discussing the studies about long covid, as well as the ones tracking new variants--because I want to know the impact of these variants on long covid as it becomes known. I do this via Substack, Twitter, and in my day job. I have stopped talking about covid with even close friends because the discussions aren't productive or comforting or enlightening.
Instead, I treat covid similarly to how I assess risk, behave, and talk when protecting myself against sun damage: Everybody has their own type of skin and sun tolerance, everyone has their own risk level comprising several factors such as genes and clothing and medication, and everyone takes their own type of precautions such as high SPF or total avoidance or limited exposure. Yes, melanoma is rare, but I learned in my 40s that my biological father died young from it, so there's nothing anyone can say to me to just relax about sun exposure.
posted by ImproviseOrDie at 5:27 AM on January 3, 2023 [4 favorites]
I want to focus on just this question. Everyone has their own method of coping. A few other posters mention avoiding mention of covid in media. Maybe you need meditation or other ways of learning to observe your thoughts without being ruled by them? Maybe you need a different info diet? Sounds like you definitely need to temper your exposure to the people who say horrible things to you.
My method of not feeling doomed involves more of the right kind of info, and almost none of the kind that's wrong for me. (My brother died of covid, I studied covid misinfo in my MPH program, I work with covid scientists, and I know a few people debilitated by long covid.) I follow the scientists conducting and discussing the studies about long covid, as well as the ones tracking new variants--because I want to know the impact of these variants on long covid as it becomes known. I do this via Substack, Twitter, and in my day job. I have stopped talking about covid with even close friends because the discussions aren't productive or comforting or enlightening.
Instead, I treat covid similarly to how I assess risk, behave, and talk when protecting myself against sun damage: Everybody has their own type of skin and sun tolerance, everyone has their own risk level comprising several factors such as genes and clothing and medication, and everyone takes their own type of precautions such as high SPF or total avoidance or limited exposure. Yes, melanoma is rare, but I learned in my 40s that my biological father died young from it, so there's nothing anyone can say to me to just relax about sun exposure.
posted by ImproviseOrDie at 5:27 AM on January 3, 2023 [4 favorites]
And to hear that in particular from other disabled peers, so willing to throw away others like me as a lost cause or a cautionary tale, is especially heartbreaking.
It is absolutely ableism, classic, by-the-book ableism, to decide that anyone who needs help must be at fault for their need and therefore do not deserve help, and that people who need help are better off dead. It's a shitty self-protective mental trick that lets people off the hook for doing hard things and lets them keep believing that they have control over whether or not they themselves will ever need help. The people who are telling you this are incredibly bad disability activists and you should for sure distance yourself from them. It is entirely possible for disabled people to be ableist, just like any other form of self-hatred.
And on the personal front, I have many friends who have had COVID, and a few who have pretty bad long COVID, and they're not dead nor are they living like they ought to be. Disability, whether temporary or permanent, sucks, but it does not take away your worth as a person or your potential to be fully human.
posted by restless_nomad at 7:16 AM on January 3, 2023 [5 favorites]
It is absolutely ableism, classic, by-the-book ableism, to decide that anyone who needs help must be at fault for their need and therefore do not deserve help, and that people who need help are better off dead. It's a shitty self-protective mental trick that lets people off the hook for doing hard things and lets them keep believing that they have control over whether or not they themselves will ever need help. The people who are telling you this are incredibly bad disability activists and you should for sure distance yourself from them. It is entirely possible for disabled people to be ableist, just like any other form of self-hatred.
And on the personal front, I have many friends who have had COVID, and a few who have pretty bad long COVID, and they're not dead nor are they living like they ought to be. Disability, whether temporary or permanent, sucks, but it does not take away your worth as a person or your potential to be fully human.
posted by restless_nomad at 7:16 AM on January 3, 2023 [5 favorites]
Inevitable doom is not supported numerically.
It is true that Covid carries a nontrivial chance of poor outcomes. But there's a lot of variation in nontrivial. As you know, the highest risk is long covid, which is something like 1 in 10? This means that 9 people in 10 will escape it. There's increased risk of diabetes and stroke (and others), but the baseline risk is still low; far less than 100%. Risks do compound with multiple infections, but they don't literally add. In reality, the majority of people will be fine. Even after multiple infections.
In more precise terms, the risks are far greater than "rare" (which would be something like 1/1000, or 1/10,000). And we're only 3 years in to a novel disease. This is why we should still mask, distance, isolate, improve ventilation, etc.
Uncertainty and probability are notoriously hard for humans to wrap their heads around. Most people deal with this uncertainty by rounding to zero. That is what you see in public.
But you don't need to round up to 100%, either. That is not what the numbers say, or mean.
posted by Dashy at 7:45 AM on January 3, 2023 [4 favorites]
It is true that Covid carries a nontrivial chance of poor outcomes. But there's a lot of variation in nontrivial. As you know, the highest risk is long covid, which is something like 1 in 10? This means that 9 people in 10 will escape it. There's increased risk of diabetes and stroke (and others), but the baseline risk is still low; far less than 100%. Risks do compound with multiple infections, but they don't literally add. In reality, the majority of people will be fine. Even after multiple infections.
In more precise terms, the risks are far greater than "rare" (which would be something like 1/1000, or 1/10,000). And we're only 3 years in to a novel disease. This is why we should still mask, distance, isolate, improve ventilation, etc.
Uncertainty and probability are notoriously hard for humans to wrap their heads around. Most people deal with this uncertainty by rounding to zero. That is what you see in public.
But you don't need to round up to 100%, either. That is not what the numbers say, or mean.
posted by Dashy at 7:45 AM on January 3, 2023 [4 favorites]
I'm really horrified on your behalf and so sorry you got this response.
Please remember that Covid is something which has happened TO you. You did not cause it or seek it out nor is it related to your moral or hygienic purity. Even people who are being misled about it are people this is happening TO. This collective lousy thing from bottom to top - ableism, amnesia about the pandemic, denialism, illness, disability, death, all of it - is something that is both new to our generations, and has been present in epidemics of the past.
My suggestion is first, to ground yourself in your days. Do things that bring you joy when you can. I don't know you, so I don't know what those are for you. I'm writing this on a grey morning where I had to be at work at 7am to kick something off, but now I'm at my home desk with a candle burning and music playing.
I'm not sure how to say this but...I am in the process of getting a post-Covid heart condition diagnosed - my first stress test was so bad that I had to have a second test on an emergency basis.* The results are confusing my family doctor and I'm seeing the cardiologist soon, but this could be the no-shit, people drop dead result some people are having.
My choice is to be somewhat careful due to the information that I have, like I'm not exercising or lifting or shovelling, but also enjoy each day. Yesterday my family went for a winter walk that took us past some beautiful spots. The day before we played masked, indoor mini-golf at a quiet time for the facility. Today we're going to have a warm sweet potato thai curry flavoured soup together at dinner; it's in the slow cooker. I tell my kids I love them every morning so I know they've heard it.
But in my life...I have lost weeks and months and years to fear and I am not doing that any more. I'm 52 and I just don't have time. I will evaluate risk and I'm not going to lengthy concerts, no indoor dining, etc. But I also am not dead! You're not dead! People who want you to behave as if you are are really not managing themselves well.
I am not yet joining any Covid groups. I don't think that stuff is good for me - it gets inside my head. I will probably want to network at some point but I'm just not there yet.
My mum had polio, and has post-polio syndrome, and she's had a really good life. She did not feel that way in her grade one, when she was in bed for 6 months and almost had to repeat a grade. But now she's in Florida enjoying her life in her late 70s.
I strongly encourage you to do what you can today. If that's lie down and watch videos/listen to audiobooks/whatever great. If it's going for a walk, great. We all get one day guaranteed - today, and that's it. Enjoy this one! Light some candles, or whatever brings you joy.
*The day before my first family member got Covid I ran 5km, the end up a hill, no problem. I also had a completely clear cardiology screen in 2018. Post-Covid, I have "something unclear going on" in one of my arteries (I'm probably heading for an angiogram), bouts of tachycardia, and cannot make it up a flight of stairs quickly. I have no idea if this is permanent or something I will heal from, and I don't actually think anyone else can know for sure. But I'm so far from dead!
posted by warriorqueen at 8:04 AM on January 3, 2023 [10 favorites]
Please remember that Covid is something which has happened TO you. You did not cause it or seek it out nor is it related to your moral or hygienic purity. Even people who are being misled about it are people this is happening TO. This collective lousy thing from bottom to top - ableism, amnesia about the pandemic, denialism, illness, disability, death, all of it - is something that is both new to our generations, and has been present in epidemics of the past.
My suggestion is first, to ground yourself in your days. Do things that bring you joy when you can. I don't know you, so I don't know what those are for you. I'm writing this on a grey morning where I had to be at work at 7am to kick something off, but now I'm at my home desk with a candle burning and music playing.
I'm not sure how to say this but...I am in the process of getting a post-Covid heart condition diagnosed - my first stress test was so bad that I had to have a second test on an emergency basis.* The results are confusing my family doctor and I'm seeing the cardiologist soon, but this could be the no-shit, people drop dead result some people are having.
My choice is to be somewhat careful due to the information that I have, like I'm not exercising or lifting or shovelling, but also enjoy each day. Yesterday my family went for a winter walk that took us past some beautiful spots. The day before we played masked, indoor mini-golf at a quiet time for the facility. Today we're going to have a warm sweet potato thai curry flavoured soup together at dinner; it's in the slow cooker. I tell my kids I love them every morning so I know they've heard it.
But in my life...I have lost weeks and months and years to fear and I am not doing that any more. I'm 52 and I just don't have time. I will evaluate risk and I'm not going to lengthy concerts, no indoor dining, etc. But I also am not dead! You're not dead! People who want you to behave as if you are are really not managing themselves well.
I am not yet joining any Covid groups. I don't think that stuff is good for me - it gets inside my head. I will probably want to network at some point but I'm just not there yet.
My mum had polio, and has post-polio syndrome, and she's had a really good life. She did not feel that way in her grade one, when she was in bed for 6 months and almost had to repeat a grade. But now she's in Florida enjoying her life in her late 70s.
I strongly encourage you to do what you can today. If that's lie down and watch videos/listen to audiobooks/whatever great. If it's going for a walk, great. We all get one day guaranteed - today, and that's it. Enjoy this one! Light some candles, or whatever brings you joy.
*The day before my first family member got Covid I ran 5km, the end up a hill, no problem. I also had a completely clear cardiology screen in 2018. Post-Covid, I have "something unclear going on" in one of my arteries (I'm probably heading for an angiogram), bouts of tachycardia, and cannot make it up a flight of stairs quickly. I have no idea if this is permanent or something I will heal from, and I don't actually think anyone else can know for sure. But I'm so far from dead!
posted by warriorqueen at 8:04 AM on January 3, 2023 [10 favorites]
I think you might be greatly helped by moving from disability activism circles to disability *positivity* circles.
When I was first dealing with a diagnosis that’s linked to long covid (although mine came years and years ago), I had to leave disability activist groups. I had been in them for my physical disabilities but they were not great for my chronic illness needs. The constant amping up cycle didn’t support what I needed to thrive. I actually started a blog of like disability positivity memes that I made. Things like “My life is different than I imagined, but it’s full of small joys I never would have experienced otherwise.” Like really cheesy. But it helped my nervous system so much! And I made a new group of friends who weren’t so angry and were more into the soft pleasures of our animal bodies and what was open and available to us as we were/are.
I have found that a lot of disability justice circles are super toxic and not at all people centered. It feels like they have the moral imperative when you are inside them, but as you are saying - it’s very easy to quickly become on the outs.
I spend a lot of time supporting people who are post covid. Because I love them and they are the same people who are worthy of care as they were before. And many of them have additional needs now, but that’s ok! They deserve to feel hope about the future even if they always have higher support need than they did before.
Knowing you and what an amazing force you are in the world, I think you should take the opportunity to create the art that would support you. Write the words you need to read. There are so many people feeling the way you are, and you can help them by helping yourself. It feels cheesy to write those affirmations, but it is life giving.
posted by Bottlecap at 8:04 AM on January 3, 2023 [6 favorites]
When I was first dealing with a diagnosis that’s linked to long covid (although mine came years and years ago), I had to leave disability activist groups. I had been in them for my physical disabilities but they were not great for my chronic illness needs. The constant amping up cycle didn’t support what I needed to thrive. I actually started a blog of like disability positivity memes that I made. Things like “My life is different than I imagined, but it’s full of small joys I never would have experienced otherwise.” Like really cheesy. But it helped my nervous system so much! And I made a new group of friends who weren’t so angry and were more into the soft pleasures of our animal bodies and what was open and available to us as we were/are.
I have found that a lot of disability justice circles are super toxic and not at all people centered. It feels like they have the moral imperative when you are inside them, but as you are saying - it’s very easy to quickly become on the outs.
I spend a lot of time supporting people who are post covid. Because I love them and they are the same people who are worthy of care as they were before. And many of them have additional needs now, but that’s ok! They deserve to feel hope about the future even if they always have higher support need than they did before.
Knowing you and what an amazing force you are in the world, I think you should take the opportunity to create the art that would support you. Write the words you need to read. There are so many people feeling the way you are, and you can help them by helping yourself. It feels cheesy to write those affirmations, but it is life giving.
posted by Bottlecap at 8:04 AM on January 3, 2023 [6 favorites]
As others have said, it sounds like you would be well served by spending time with different people. But if you want to keep interacting with your current circle, because they're important social outlets for you etc., it might be easier if you translate the dumb stuff they're saying into what it really means to them/ where they're coming from, instead of taking it literally and personally.
Likely possibilities:
They're terrified that Covid will kill them or further erode their quality of life. They already know from experience that our society doesn't support disabled people so they view that as a lost cause. They think that scare tactics or guilt are the best ways to keep people from spreading Covid. They feel helpless to do anything else. They're already functioning at the edge of their capacity due to all sorts of stressors and can't offer functional help.
Don't get me wrong; I think their approach is counterproductive and you're not wrong to be hurt and frustrated by it. But if you're able to take what they say less seriously and instead recognize that it's coming from panic and pessimism, it might be easier to keep them in your life without experiencing harm.
posted by metasarah at 8:42 AM on January 3, 2023 [2 favorites]
Likely possibilities:
They're terrified that Covid will kill them or further erode their quality of life. They already know from experience that our society doesn't support disabled people so they view that as a lost cause. They think that scare tactics or guilt are the best ways to keep people from spreading Covid. They feel helpless to do anything else. They're already functioning at the edge of their capacity due to all sorts of stressors and can't offer functional help.
Don't get me wrong; I think their approach is counterproductive and you're not wrong to be hurt and frustrated by it. But if you're able to take what they say less seriously and instead recognize that it's coming from panic and pessimism, it might be easier to keep them in your life without experiencing harm.
posted by metasarah at 8:42 AM on January 3, 2023 [2 favorites]
Something it took me a really long baffled time to understand: because this situation is still ongoing, there are a bunch of points where disability justice needs (and wants, all of them on short- and long-term scales) and the unfortunate circumstances of each of us all having to run our own personal public health agency clash, and within disability discourse there are multiple clashing vectors because disability isn't a monolith.
The cognitive dissonance you're witnessing there is real, it is not just you, and even very smart thinkers in the disability discourse do not really know what to do about it, and there may not BE anything anyone can really do about it until - assuming - the pandemic comes under control. I'm sorry you've been caught up in the crossfire in exactly the way that happens when discourse forgets that people are not just theoretical.
Generally when people are being absolutely awful, it's one of two things: narcissism or fear. I'm going to go with fear on this one. People are scared, people are living on a knife's edge of panic, and it is horrifyingly obvious that nobody is coming to help. We are all, as humans collectively, clear far far less important than not making the money sad. Terrified people are not showing up as their best selves right now.
A lot of people have needed to live by a sort of report-card mentality that if they do all the right things it won't happen to them. And in a real vacuum of information, it works about as well as any other strategy. But it happening to you either has to mean that you did what they did and it didn't work (terrifying; means the threat is coming from every angle) or you were cavalier (and cavalier people are a known threat). This worldview makes no room for people who didn't have the luxury of choice that allows a report-card lifestyle. It doesn't even make room for people who require frequent contact with social or medical services to stay alive, which includes many disabled people. But people are scared, for good reason, and they are not being entirely rational.
It would certainly be nice if if felt like anybody was rushing to throw more science at Long Covid, but it certainly seems so far like the usual curve: some people have had really serious outcomes, many have had or are still having some issues, some people have had a brief period of some issues that then resolved. The range of "some issues" is pretty broad, and while many of them do put a ding in quality of life, that's true of lots of things that aren't COVID.
So yes, if there wasn't life after COVID there would be piles of bodies in the streets. People are probably being pretty ridiculous, though it would be nice if we knew more. I don't know what to tell you to do about the scared people, I don't think you're obligated to fight this fight if you don't have the heart or energy for it, because I don't know how many wins there are to score right now. You could push back and accuse people of not thinking about the long game, but would they be wrong to say yeah, I'm trying to survive the short game first? Maybe all you can do right now is find the long-gamers and the best writers and thinkers on that topic right now and align with them. You might get a chance to share what you learn with the short-gamers, maybe everybody comes out better that way. But again, take care of you first, you're not obligated to fix anybody else's worldview.
As a sort of postscript, though: the long game DOES need to hold space for people who will be significantly disabled for the rest of their lives by COVID. Because some will. Acknowledging those people is not a mandate that you be one of them, but your solidarity with them is needed.
posted by Lyn Never at 9:00 AM on January 3, 2023 [7 favorites]
The cognitive dissonance you're witnessing there is real, it is not just you, and even very smart thinkers in the disability discourse do not really know what to do about it, and there may not BE anything anyone can really do about it until - assuming - the pandemic comes under control. I'm sorry you've been caught up in the crossfire in exactly the way that happens when discourse forgets that people are not just theoretical.
Generally when people are being absolutely awful, it's one of two things: narcissism or fear. I'm going to go with fear on this one. People are scared, people are living on a knife's edge of panic, and it is horrifyingly obvious that nobody is coming to help. We are all, as humans collectively, clear far far less important than not making the money sad. Terrified people are not showing up as their best selves right now.
A lot of people have needed to live by a sort of report-card mentality that if they do all the right things it won't happen to them. And in a real vacuum of information, it works about as well as any other strategy. But it happening to you either has to mean that you did what they did and it didn't work (terrifying; means the threat is coming from every angle) or you were cavalier (and cavalier people are a known threat). This worldview makes no room for people who didn't have the luxury of choice that allows a report-card lifestyle. It doesn't even make room for people who require frequent contact with social or medical services to stay alive, which includes many disabled people. But people are scared, for good reason, and they are not being entirely rational.
It would certainly be nice if if felt like anybody was rushing to throw more science at Long Covid, but it certainly seems so far like the usual curve: some people have had really serious outcomes, many have had or are still having some issues, some people have had a brief period of some issues that then resolved. The range of "some issues" is pretty broad, and while many of them do put a ding in quality of life, that's true of lots of things that aren't COVID.
So yes, if there wasn't life after COVID there would be piles of bodies in the streets. People are probably being pretty ridiculous, though it would be nice if we knew more. I don't know what to tell you to do about the scared people, I don't think you're obligated to fight this fight if you don't have the heart or energy for it, because I don't know how many wins there are to score right now. You could push back and accuse people of not thinking about the long game, but would they be wrong to say yeah, I'm trying to survive the short game first? Maybe all you can do right now is find the long-gamers and the best writers and thinkers on that topic right now and align with them. You might get a chance to share what you learn with the short-gamers, maybe everybody comes out better that way. But again, take care of you first, you're not obligated to fix anybody else's worldview.
As a sort of postscript, though: the long game DOES need to hold space for people who will be significantly disabled for the rest of their lives by COVID. Because some will. Acknowledging those people is not a mandate that you be one of them, but your solidarity with them is needed.
posted by Lyn Never at 9:00 AM on January 3, 2023 [7 favorites]
Nthing all the people horrified at the comments you're getting from supposed friends.
Similar to brook horse, I had what (in hindsight) was long-term post-viral syndrome issues (after H1N1 on top of some other chronic stuff becoming visible in 2009). In my case, my job didn't renew my contract (about 6 months later), I was out of work for a year and spent a lot of that year sleeping (so much exhaustion), and I had a fair bit of brain fog cognitive impairment on top of that.
And here's the thing. A lot of the pieces of it got better. I figured out how to rewire my brain into making words go again out of the mists of the brain fog. I dramatically revamped parts of my life, but I like my life now, and I'm doing things I'm delighted to be doing.
For me, stuff that helped:
- Finding doctors who listened to me, who could help me figure out options for the more minor stuff that was still a drain on me to manage (this has included everything from getting an IUD to a CPAP machine to fiddling with med choices for chronic stuff over time.)
- Being rigorous about avoiding stuff that's going to be a drain on my body. (That includes continuing to be super cautious about being around other people for Covid reasons, but I was already pretty cautious about checking with friends before doing social stuff about colds/flu/etc. The difference now is I'm just as cautious about work interactions and going grocery shopping.)
- Being ruthless about cutting out spending time (and especially focus or energy) on things I don't actually care much about. I don't care a lot about clothing (other than being comfortable and reasonably appropriate to the enviroment), so I have an easy to manage more or less uniform that's also easy to deal with as laundry (no fancy cleaning requirements). Some stuff I hire out.
- Annoyingly but importantly - being ruthless about how few times I have to leave the house. Since 2010, most of my social life has been online in varying forms, because leaving the house is extra exhausting for me. For that decade, other than going to work, the most necessary errands (grocery, pharmacy), I let myself schedule one weekday thing a week and one weekend thing - across all my stuff. If I had a doctor's appointment, or the car needed an oil change, I didn't get to see friends in person that week. (My work currently being hybrid has been amazing that way, and being WFH entirely for more than a year really brought me to realise how much the ongoing chronic stuff is disabling in particular ways, even when it's well-managed.)
There are ways that this sucked. There are also ways in which it absolutely let me keep up meaningful relationships with people online. (This turned out to be a really useful skill, come 2020, though!) And it meant I could also do necessary stuff (keep myself fed), do a lot of creative work I'm really proud of, and do a good job in my professional life. The key for me is figuring out what it really matters to me to do, what I can do and enjoy in ways that are more functional for me, and then giving myself guidelines that help me do those things.
But I also have a pretty darn good life, by a lot of standards. I just need to be a lot more deliberate about a bunch of choices than most people are. (I am also extremely careful about getting enough sleep, going "Yeah, no I need to lie down now" when that hits, etc.)
posted by jenettsilver at 9:03 AM on January 3, 2023 [7 favorites]
Similar to brook horse, I had what (in hindsight) was long-term post-viral syndrome issues (after H1N1 on top of some other chronic stuff becoming visible in 2009). In my case, my job didn't renew my contract (about 6 months later), I was out of work for a year and spent a lot of that year sleeping (so much exhaustion), and I had a fair bit of brain fog cognitive impairment on top of that.
And here's the thing. A lot of the pieces of it got better. I figured out how to rewire my brain into making words go again out of the mists of the brain fog. I dramatically revamped parts of my life, but I like my life now, and I'm doing things I'm delighted to be doing.
For me, stuff that helped:
- Finding doctors who listened to me, who could help me figure out options for the more minor stuff that was still a drain on me to manage (this has included everything from getting an IUD to a CPAP machine to fiddling with med choices for chronic stuff over time.)
- Being rigorous about avoiding stuff that's going to be a drain on my body. (That includes continuing to be super cautious about being around other people for Covid reasons, but I was already pretty cautious about checking with friends before doing social stuff about colds/flu/etc. The difference now is I'm just as cautious about work interactions and going grocery shopping.)
- Being ruthless about cutting out spending time (and especially focus or energy) on things I don't actually care much about. I don't care a lot about clothing (other than being comfortable and reasonably appropriate to the enviroment), so I have an easy to manage more or less uniform that's also easy to deal with as laundry (no fancy cleaning requirements). Some stuff I hire out.
- Annoyingly but importantly - being ruthless about how few times I have to leave the house. Since 2010, most of my social life has been online in varying forms, because leaving the house is extra exhausting for me. For that decade, other than going to work, the most necessary errands (grocery, pharmacy), I let myself schedule one weekday thing a week and one weekend thing - across all my stuff. If I had a doctor's appointment, or the car needed an oil change, I didn't get to see friends in person that week. (My work currently being hybrid has been amazing that way, and being WFH entirely for more than a year really brought me to realise how much the ongoing chronic stuff is disabling in particular ways, even when it's well-managed.)
There are ways that this sucked. There are also ways in which it absolutely let me keep up meaningful relationships with people online. (This turned out to be a really useful skill, come 2020, though!) And it meant I could also do necessary stuff (keep myself fed), do a lot of creative work I'm really proud of, and do a good job in my professional life. The key for me is figuring out what it really matters to me to do, what I can do and enjoy in ways that are more functional for me, and then giving myself guidelines that help me do those things.
But I also have a pretty darn good life, by a lot of standards. I just need to be a lot more deliberate about a bunch of choices than most people are. (I am also extremely careful about getting enough sleep, going "Yeah, no I need to lie down now" when that hits, etc.)
posted by jenettsilver at 9:03 AM on January 3, 2023 [7 favorites]
How do these folks treat everyone else who "made a mistake" and ended up disabled or chronically ill from it? If you're disabled from a car crash where you were at fault and you've got to adapt to living your life in a whole new way, do they treat those people badly too?
I admit I'm asking one part in indignation, but also in seriousness: is this a group of people that practices compassion and support, or are they focused more on the kind of activism that comes from fear and anger? And if you think the answer is different for different folks, maybe that will point you to where you should direct more of your energy and hopes.
posted by Lady Li at 12:42 AM on January 4, 2023
I admit I'm asking one part in indignation, but also in seriousness: is this a group of people that practices compassion and support, or are they focused more on the kind of activism that comes from fear and anger? And if you think the answer is different for different folks, maybe that will point you to where you should direct more of your energy and hopes.
posted by Lady Li at 12:42 AM on January 4, 2023
Response by poster: To answer a few questions:
1. This isn't, like, one formal group of people. It's more like scattered networks from across the world, some of whom I've either met in person through my work or are connected to people I know, the others I only really know online, all with varying levels of familiarity. Some of them are people I met from not-necessarily-disability-centric spaces, but are disabled themselves, so we became friends that way. Some do direct activist work, others talk about their lives openly as disabled folk but don't necessarily do any other activisting beyond advocating for themselves and others. The comments come from across the board. There's been a few friendships/acquaintanceships I've ended because the backlash was so intense.
2. The reason I mention anti-vaxxers/Covid deniers as a distinct category is that 99% of the people I know tend to be very solidly and loudly pro-mask, fight Covid, everyone must vaccinate, this next wave is deadlier than the last so if you don't isolate or mask up you are liable for murder, etc etc, or have expressed sympathy with that group. The only people I know who would be more "normcore" or at least less vocal about Covid prevention are my relatives, who are very blase about masks. However, I have noticed that some people tend to conflate my position on survivor support as being in the same category as anti-vaxxers and Covid denialists - the three words "life after Covid" is a SIGNIFICANT trigger. Like some of you have alluded to, they are so caught up in anger towards anti-vaxxers and Covid denialists that even the same three words, regardless of context, is enough to assume that we must be one and the same. "How dare you talk about life after Covid when disabled people are dying?!?! You just want to return to normal and leave us to die!! YOU'RE A DENIALIST!!!" blaaarggghhh
3. As far as organised Covid survivor groups go, I'm only really in one specific Facebook group for survivors local to me (a lot of groups are American and I'm not), but I haven't really checked in because a lot of the posts are from people newly dealing with Long Covid talking in detail about their symptoms and it gets a bit much. My friends who have gotten Covid themselves are largely on my side but we're not like an organised collective or anything. I would be down to join more disability-positivity groups - if I knew of any! (Wellness groups might annoy me too much though, not really keen to deal with more people thinking I'm a namaste-yoga expert from birth by virtue of being brown...)
4. I mentioned this earlier but Long Covid is a strong possibility for me - I did have to deal with intense lingering symptoms and I also have other pre-existing conditions that got exacerbated by Covid. It's just that I got my 3 bouts pretty much back to back (within 3 months of each other) so it's hard to tell at this stage what is Long Covid, what's like compounded Covid, and what's just my body being a wreck in some other fashion.
5. "How do they treat people that got disabled through other means?" Y'know, one thing I did notice from very early on in the pandemic is that a lot of these same people who would normally be a lot more accepting of people disabled through other means were suddenly super hostile towards Covid. I straight up saw people call for criminal action towards those that inadvertedly spread Covid, and that's continued on to stuff like "if you're not masked in that specific photo, you don't care about disabled people". Things only really started taking a turn in 2022 when more and more people I know were getting Covid, but that just made the people who still didn't get it even more anxious and judgemental.
Thank you for your responses, it's heartening to know that I'm not completely off the rails or anything.
posted by creatrixtiara at 2:27 AM on January 4, 2023
1. This isn't, like, one formal group of people. It's more like scattered networks from across the world, some of whom I've either met in person through my work or are connected to people I know, the others I only really know online, all with varying levels of familiarity. Some of them are people I met from not-necessarily-disability-centric spaces, but are disabled themselves, so we became friends that way. Some do direct activist work, others talk about their lives openly as disabled folk but don't necessarily do any other activisting beyond advocating for themselves and others. The comments come from across the board. There's been a few friendships/acquaintanceships I've ended because the backlash was so intense.
2. The reason I mention anti-vaxxers/Covid deniers as a distinct category is that 99% of the people I know tend to be very solidly and loudly pro-mask, fight Covid, everyone must vaccinate, this next wave is deadlier than the last so if you don't isolate or mask up you are liable for murder, etc etc, or have expressed sympathy with that group. The only people I know who would be more "normcore" or at least less vocal about Covid prevention are my relatives, who are very blase about masks. However, I have noticed that some people tend to conflate my position on survivor support as being in the same category as anti-vaxxers and Covid denialists - the three words "life after Covid" is a SIGNIFICANT trigger. Like some of you have alluded to, they are so caught up in anger towards anti-vaxxers and Covid denialists that even the same three words, regardless of context, is enough to assume that we must be one and the same. "How dare you talk about life after Covid when disabled people are dying?!?! You just want to return to normal and leave us to die!! YOU'RE A DENIALIST!!!" blaaarggghhh
3. As far as organised Covid survivor groups go, I'm only really in one specific Facebook group for survivors local to me (a lot of groups are American and I'm not), but I haven't really checked in because a lot of the posts are from people newly dealing with Long Covid talking in detail about their symptoms and it gets a bit much. My friends who have gotten Covid themselves are largely on my side but we're not like an organised collective or anything. I would be down to join more disability-positivity groups - if I knew of any! (Wellness groups might annoy me too much though, not really keen to deal with more people thinking I'm a namaste-yoga expert from birth by virtue of being brown...)
4. I mentioned this earlier but Long Covid is a strong possibility for me - I did have to deal with intense lingering symptoms and I also have other pre-existing conditions that got exacerbated by Covid. It's just that I got my 3 bouts pretty much back to back (within 3 months of each other) so it's hard to tell at this stage what is Long Covid, what's like compounded Covid, and what's just my body being a wreck in some other fashion.
5. "How do they treat people that got disabled through other means?" Y'know, one thing I did notice from very early on in the pandemic is that a lot of these same people who would normally be a lot more accepting of people disabled through other means were suddenly super hostile towards Covid. I straight up saw people call for criminal action towards those that inadvertedly spread Covid, and that's continued on to stuff like "if you're not masked in that specific photo, you don't care about disabled people". Things only really started taking a turn in 2022 when more and more people I know were getting Covid, but that just made the people who still didn't get it even more anxious and judgemental.
Thank you for your responses, it's heartening to know that I'm not completely off the rails or anything.
posted by creatrixtiara at 2:27 AM on January 4, 2023
the three words "life after Covid" is a SIGNIFICANT trigger.
Of course it is, so it would probably pay you to avoid using those three words in that order if what you mean is something closer to "dealing with the aftereffects of yet another bout".
"Life after Covid" is going to be iffy for at least as long as the world remains committed to this ridiculous hallucinatory perception that the pandemic is somehow over. Best avoided until health care systems are no longer operating under the present conditions of gross overload.
posted by flabdablet at 3:58 AM on January 4, 2023 [6 favorites]
Of course it is, so it would probably pay you to avoid using those three words in that order if what you mean is something closer to "dealing with the aftereffects of yet another bout".
"Life after Covid" is going to be iffy for at least as long as the world remains committed to this ridiculous hallucinatory perception that the pandemic is somehow over. Best avoided until health care systems are no longer operating under the present conditions of gross overload.
posted by flabdablet at 3:58 AM on January 4, 2023 [6 favorites]
Ohhhh, it had not occurred to me until reading flabdablet’s comment that this might be down to a misunderstanding. But I bet that’s it.
posted by eirias at 10:55 AM on January 4, 2023 [2 favorites]
posted by eirias at 10:55 AM on January 4, 2023 [2 favorites]
Best answer: I consider myself to be relatively COVID-cautious (I still wear a mask when I go inside shops, despite being pretty much the only person in my area to do so). And it makes me really angry when people who are "on my side" go down the COVID catastrophist rabbit hole.
I don't want to both-sides this, because I don't think that they're objectively as bad as antivaxxers even at their most extreme, but they can get pretty bad, and their behaviour is functionally just as irrational. They latch onto cherry-picked studies that appear to show that COVID is much more dangerous than it actually is in exactly the same way that antivaxxers latch onto whatever out-of-context research appears to support whatever nutty thing they want to believe today. It's not a good look.
I understand why they're doing it, and I have a lot of sympathy for them, especially when they're people who are statistically at risk of much worse outcomes. I understand that they're really fucking angry about the way public health measures have been mismanaged by authorities, and how blasé most of the public is about them, and how maybe 50% of the human population threw a massive toddler temper tantrum over being asked to do something simple to prevent the spread of disease because it felt mildly inconvenient. I understand that they're frustrated because they've been left to fend for themselves, and in some cases feel incredibly isolated because the only way they can keep themselves safe in a society that won't keep them safe is to literally physically isolate themselves. All of these things make me angry too, although not as existentially terrified, because I am not in a high-risk group.
But that doesn't make them correct (as other commenters have said, the numbers simply do not support them), and it doesn't make what they're doing a useful form of activism. They're never going to make irresponsible people who don't care about COVID care about COVID by scaring them with exaggerations. They're just going to keep racking up collateral damage, scaring people who have had COVID instead of supporting them. Which sucks.
I haven't had COVID (to the best of my knowledge), but both of my parents did, about a year ago. They seem fine now. Of course I worry about delayed side effects -- but I try not to become consumed by this anxiety. This isn't something that I can prevent, and there are all kinds of health problems that people their age could suddenly develop which have nothing to do with COVID, and which I can't prevent either. All I can do is encourage them to look after their own health, and to be ready to support them as best I can if something does happen.
I wish you all the best with your recovery -- three bouts back to back sounds incredibly rough, both physically and psychologically. I sincerely hope both that you get well and that you can find some spaces and form some relationships where you can find more support and less catastrophizing.
posted by confluency at 11:23 AM on January 4, 2023 [3 favorites]
I don't want to both-sides this, because I don't think that they're objectively as bad as antivaxxers even at their most extreme, but they can get pretty bad, and their behaviour is functionally just as irrational. They latch onto cherry-picked studies that appear to show that COVID is much more dangerous than it actually is in exactly the same way that antivaxxers latch onto whatever out-of-context research appears to support whatever nutty thing they want to believe today. It's not a good look.
I understand why they're doing it, and I have a lot of sympathy for them, especially when they're people who are statistically at risk of much worse outcomes. I understand that they're really fucking angry about the way public health measures have been mismanaged by authorities, and how blasé most of the public is about them, and how maybe 50% of the human population threw a massive toddler temper tantrum over being asked to do something simple to prevent the spread of disease because it felt mildly inconvenient. I understand that they're frustrated because they've been left to fend for themselves, and in some cases feel incredibly isolated because the only way they can keep themselves safe in a society that won't keep them safe is to literally physically isolate themselves. All of these things make me angry too, although not as existentially terrified, because I am not in a high-risk group.
But that doesn't make them correct (as other commenters have said, the numbers simply do not support them), and it doesn't make what they're doing a useful form of activism. They're never going to make irresponsible people who don't care about COVID care about COVID by scaring them with exaggerations. They're just going to keep racking up collateral damage, scaring people who have had COVID instead of supporting them. Which sucks.
I haven't had COVID (to the best of my knowledge), but both of my parents did, about a year ago. They seem fine now. Of course I worry about delayed side effects -- but I try not to become consumed by this anxiety. This isn't something that I can prevent, and there are all kinds of health problems that people their age could suddenly develop which have nothing to do with COVID, and which I can't prevent either. All I can do is encourage them to look after their own health, and to be ready to support them as best I can if something does happen.
I wish you all the best with your recovery -- three bouts back to back sounds incredibly rough, both physically and psychologically. I sincerely hope both that you get well and that you can find some spaces and form some relationships where you can find more support and less catastrophizing.
posted by confluency at 11:23 AM on January 4, 2023 [3 favorites]
Response by poster: (it doesn't only happen when I use the words "life after Covid", that's just one circumstance that seems to bring on a lot of it even if it's surrounded with a lot of other text. But I've also gotten similar comments just by talking about my experiences with whatever wording.)
posted by creatrixtiara at 5:00 PM on January 4, 2023
posted by creatrixtiara at 5:00 PM on January 4, 2023
Some semblance of life after Covid has to be possible, right?
So hey, I know I'm a little late to the thread, but: I'm one of the original group of Long COVID folks in the US. It screwed me up pretty bad, and still does. I have to manage my energy level so closely that it precludes me from A LOT of activities. I seem to have settled into being able to do about 1/2-2/3rds of what I considered normal before most days (some days a lot less), there's an entire 1 1/2 year(ish) span of my life that I formed almost no memories of, my thoughts still often come slower in a way that frustrates me to no end, and I've got a lot of other mild to severe annoyances that aren't worth mentioning here.
However, I'm still managing to get a 2 year degree, and mostly run a household of 5 folks and 7 critters. I'm very proud of what I've (re)built and how I've let myself heal and how I've adapted to my new limitations. Hell, there's that old bit they teach you in music theory that limitation are necessary to help spark creativity. I've certainly grown in ways I wouldn't have had to otherwise. So while I wouldn't wish this on anyone, especially folks who are already struggling, it's entirely possible to have a life after COVID, and having COVID is neither a death sentence nor a moral failing. Scared groups of folks are usually scared for a reason, but can form some really nasty beliefs because of that fear.
posted by Gygesringtone at 7:12 AM on January 29, 2023 [1 favorite]
So hey, I know I'm a little late to the thread, but: I'm one of the original group of Long COVID folks in the US. It screwed me up pretty bad, and still does. I have to manage my energy level so closely that it precludes me from A LOT of activities. I seem to have settled into being able to do about 1/2-2/3rds of what I considered normal before most days (some days a lot less), there's an entire 1 1/2 year(ish) span of my life that I formed almost no memories of, my thoughts still often come slower in a way that frustrates me to no end, and I've got a lot of other mild to severe annoyances that aren't worth mentioning here.
However, I'm still managing to get a 2 year degree, and mostly run a household of 5 folks and 7 critters. I'm very proud of what I've (re)built and how I've let myself heal and how I've adapted to my new limitations. Hell, there's that old bit they teach you in music theory that limitation are necessary to help spark creativity. I've certainly grown in ways I wouldn't have had to otherwise. So while I wouldn't wish this on anyone, especially folks who are already struggling, it's entirely possible to have a life after COVID, and having COVID is neither a death sentence nor a moral failing. Scared groups of folks are usually scared for a reason, but can form some really nasty beliefs because of that fear.
posted by Gygesringtone at 7:12 AM on January 29, 2023 [1 favorite]
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posted by Eyelash at 7:00 PM on January 2, 2023 [33 favorites]